Writing Disability: Phantom Limbs in Amputees

This was something I got asked about a lot whenever I made videos about amputee representation, so let's talk about Phantom Limb Sensation (PLS) and Phantom Limb Pain (PLP).

[ID: A GIF of a stereotypical cartoon ghost with a white body, black eyes and a black mouth waving its arms and speaking, though what its saying is unknown. The background appears to be a painting of a cave. /End ID]

 What is it and what causes it?

Phantom Limb Sensation is when you can feel a limb, even after it's been amputated. This phantom limb is a VERY common side effect of amputation, one that almost every amputee experiences at some point. Depending on how the limb was amputated, how old the person was at the time and the condition of the limb before amputation, it can last for as little as a year to being a life-long condition.

it's caused by the part of your brain responsible for proprioception - the sense of where your body is in space. Your brain has an internal map of your body and specifically your nervous system, and it uses this to determine where certain body parts are in space, even without input from your 5 main senses, meaning you don't need to look to know where, say, your leg or hand is (usually, though other disabilities like autism and ADHD can affect this and make it less accurate). Usually, the brain senses where your body parts are using a combination of this map and input from nerves. But if something happens to your body part, that internal map can have a lot of trouble updating, and when the internal map and the nerve inputs don't match, it can cause your brain to panic and fill in the gaps from the missing input signals, creating the sensation that a lost body part, usually a limb, is still there. For some, the limb light be locked in place, other might have the sensation of the limb "growing back" (though as I understand it, this typically only happens to very young children) and others feel as though the limb is perfectly fine and moving along with the rest of the body normally.
This sensation isn't unique to people who have lost limbs mind you: some trans people who have had top or bottom surgery, people who've had mastectomies, and even people who have had growths or tumours removed often report a similar sensation of their removed parts still being present, though it's not usually as intense and fades after a few months to a few years on its own with minimal intervention, leading to it being categorised as a separate phenomenon to Phantom Limbs in these cases.

Phantom Limb Pain is an extension of phantom limb sensation, caused by the body's more extreme reaction to the same phenomenon. The exact reason why it occurs isn't known, but in many people, instead of feeling a persistent presence of a limb that's no longer there, they will feel discomfort or pain radiating from the lost limb. For some people, it might be an itch on the phantom limb they can't scratch, for others, the pain can feel like intense "pins and needles" all over the lost limb, others feel an electric "zap" running through the non-existent nerves, like they've grabbed a low-voltage electric fence, some people feel a dull, pounding pain, like the lost limb is being crushed or pushed into positions it shouldn't be able to go into (e.g. someone who had their knee amputated might feel the joint bending in the wrong direction). Some people experience all of these, some only experience one. Everyone will be different.

How is it treated?

Like with many things in life, prevention is better than a cure. certain measures can be taken to lessen the intensity of PLP and PLS before it can even start.

Content Warning (Mild written gore): description of the process of surgical amputations

People who have had amputations in the last 10 years will go through a slightly different procedure than those who had amputations before then. Historically, the limb would be amputated by cutting directly through the limb and either sewn shut or by having a skin graft where tissue is used to create a "cap" at the end of the stump. These methods worked, but left nothing for the nerves to connect to once everything was healed, leading the brain to think the reason for the lack of signal from the limb is that the limb was simply broken. Not only can this cause added intensity to the nerve pain, it also increase the risk of something called a neuroma, where the nerves attempt to mend the "break" and continue to grow until they hit the surface of the skin. They continue to try and grow to correct the issue, which causes them to bundle up and get tangled, creating a feed back loop in the nerves and amplifying any signal from the area. When left untreated neuromas can grow and the "feedback loop" effect intensifies, until anything even brushing past the area causes a great deal of pain. This, in turn, makes both real pain in the area and phantom limb pain worse.

Today though, when conditions allow, amputations are done by cutting through the limb as before, then once the skin layers are reached on the other side, surgeons cut downward, creating a long tab of skin which is pulled over the bottom of the stump and reattached to the front. This allows the major nerve pathways in the limb to connect with each other during the healing process, creating a loop in the nerves and tricking the brain into thinking it's still receiving signals from the amputated limb.

Those who had their amputations prior to this change in the procedure can have a similar operation done to achieve a similar effect, though in both cases, it doesn't always work and can lead to the brain producing very very strange phantom limb sensations. In my personal case, it creates a sensation that I can feel my own skin in the area as though it was something separate from the rest of the body, almost like I'm wearing a sock made of skin and fat tissue. Very odd, and it feels as cursed as it sounds lol

If prevention isn't an option though, different treatments exist.

One popular method is through compression. what's left of the amputated limb (called the stump) will be either wrapped in very strong compression bandages or the person can wear a fitted compression sock on the stump. This is usually done for the first 6-12 weeks after the amputation, though it can be done for longer under the supervision of a rehab specialist in some circumstances. After 6-12 weeks, the stump will usually have healed enough for a prosthetic to be fitted. After this point, the person is encouraged to wear the prosthetic or at least the liner, usually made from silicone in modern prosthetics, instead of a compression sock/bandage. The liners of the prosthetic offer milder compression, as does the socket of the prosthetic itself, and the "snug" feeling can, for some, make the phantom pain more bearable and the phantom sensation less frequent (though some people experience the opposite and will have increased PLP/PLS while adjusting to the prosthetic, though it usually subsides eventually).

For leg amputees specifically, they are encouraged to walk on their new prosthetics as much as possible, as the action of walking with the prosthetic will often trigger the phantom limb to start "moving" in time with the rest of the leg, and the sensation of walking can essentially trick the brain into using the phantom limb sensation to help the person walk more naturally and feel less unstable.
Another treatment is called Mirror Therapy, though this only works for single-limb amputees or arm and leg amputees who's amputations were on the same side (e.g. both left leg and left arm). The person puts their full remaining limb in front of a mirror and their amputated limb behind the mirror, then angles themselves so it appears that their full limb being reflected in the mirror is replacing the lost limb. If the person is experiencing an itch on their lost limb, they can scratch the full one, and look into the mirror. Eventually, your brain will feel the scratching sensation on the phantom limb instead.

If none of these options work, nerve pain medications such as gabapentin can be prescribed, though this is usually a last resort as these medications can have serious side effects and can prevent people from being able to do certain jobs or even drive depending on the dosage. As an absolute last resort, an injection can be given to the person to numb the stump. This does not stop the pain completely, but it does subdue it. Many doctors warn against this though as it often means the person will not be able to feel if their stump is injured and can result in them not noticing wounds, resulting in infections.

Unfortunately, there is no "cure" yet, and many amputees just learn to live with PLP and PLS.

What things make you more or less likely to experience PLP/PLS?

There are some things that can make you more or less likely to experience PLP and PLS, and that can effect how intensely you experience them.

Your age when you lost the limb

People who are born without the limb almost never experience PLP and PLS, as their brain's internal map already knows the limb isn't there. Likewise, children who lost their limb very early in life don't usually experience PLS very intensely, or for very long, and are less likely to experience PLP at all. This is because when you are young, your brain is already updating that internal map because you're growing, so it has an easier time understanding the fact the limb isn't there anymore. Young brains are also constantly changing and growing, making them more adaptable in general to acquiring major disabilities. On the flip-side someone who lost their limb late in life is more likely to experience PLP and PLS for the rest of their lives. It can be managed, but it will likely always be pressant. Thier brains have not really needed to make any major updates to that map, often for decades, and are not really built to be able to do that, meaning PLP and PLS will likely take longer to go away, if they ever go away at all.

How you lost it and the condition of the limb before it was amputated.

If you lost your limb due to trauma, meaning events like accidents or major injury, the phantom sensation you experience will likely be much more painful, and could even feel like the injury or accident is happening over and over again in some cases. For example, someone who lost their arm to a shark attack might feel the sensation of the shark's teeth biting into it as well as the sensations described in the first section.

Alternatively, someone who had their limb amputated due to a pre-existing condition might continue to feel that condition even after the limb is gone. As a personal example, I've had multiple amputations throughout my life, but my most recent was due to a bone infection that formed at the bottom of my stump from a previous amputation. Now, when I experience phantom limb sensation, I can still feel where the infection reached the surface (where the nerves began to feel something was wrong). I had that leg amputated through the ankle as a young child, and when it was re-amputated higher up due to the infection, I didn't feel the whole leg, just the pre-existing stump.

Post Amputation Care

If a person does not receive proper medical care immediately after an amputation, their phantom sensation and pain will be significantly worse. My great Grandfather for example, lost part of his hand during WW2, but due to the situation, was not able to receive adequate medical care due to the medics being preoccupied with the actively dying. As a result of this and the traumatic nature of how he lost it in the first place, he experienced very intense phantom pain for the majority of his life. This is also important to keep in mind if your story takes place before the modern age, as it wasn't really understood how important post-amputation care was until recently, and many folks were left to just figure it out themselves.

Time

As with all things, phantom pain and phantom sensation fade with time. They may not ever go away entirely, but they do fade in intensity at least a little. This is especially important to keep in mind for characters with beyond-human lifespans. Your elderly grandmother character might not live long enough for their phantom pain to fade entirely, but your immortal vampire who's been alive for a millennia and lost their arm when they were human probably will.

Closing things to keep in mind

Wow, that was longer than I was expecting but I hope you found this all helpful. One last thing to keep in mind is that often times, amputees who do experience PLS/PLP get pretty good at managing it, so you don't have to worry about it too much unless the amputation happens during the story itself or you want to make it a focus, this is just an explanation of what you can include if you like. Personally, though, I feel like it's an aspect of being an amputee that a lot of media rep overlooks, so it would be nice to see some more representation at least mention it. It doesn't have to be constant, but some brief comments or something of the like will go a long way.